Antiretroviral Trial

jackie

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i would indeed be suspicious of iris if you have had a "spike" in cd4 count..preceeded by a low cd4.

corticosteroids and acyclovir are sometimes used to keep any cmv, any opportunistic infections etc. and ESPECIALLY VZV reactivation (as this can impact the brain as well as the heart), and other herpesviruses, as well as pulmonary &/or cutaneous aspergilliosis for example, under control and IF NECESSARY should be started as soon as possible.

in some cases iris CAN can be self-limiting...but since it IS a paradox and a relatively rare phenomena..it should be checked out and evaluated by your doctor (as any infections you develope can get out of hand and be potentially dangerous...if it is truly iris.) i

hope you are able to follow up with your doctor and mention these possibilities to him/her as iris is not seen that often, in non-hiv patients, but it CAN happen (it has been observed in people with RA, Lupus and cancer undergoing immunosuppressive treatments ( in addition to hiv/haart, of course)

please dont take any chances as you are obviously not doing well...and should have the guidance and support of your doctor to get through this. jackie
 

Daffodil

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wow shannah. thank you. i have been so down i just got out of bed now. i wonder what drug GSK will be testing? very very exciting..thank you.
love
sue
 

natasa778

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Sue, maybe your question how can i know if its reconstitution or worsening of the CFS is not right.... Maybe the "worsening of CFS" and reconstitution are one and the SAME thing. In other words it is quite possible that your neurological cfs symptoms of the past were caused by same or similar things as those that antiretrovirals have now exacerbated.
 

jackie

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hi natasa!...my LIMITED understanding of IRIS...is that it represents a restored ability to mount an "inflammatory response" - and this response does not necessarily signal a reactivation or worsening of symptoms of the "primary disease" (mistaken for a true disease progression) but rather a protective process initiated by the body (indicating a better chance to defeat infection leading to eventual improvement of the disease). intriquing (imo it is much more common...but is just now being investigated and tracked)

It IS a "paradox"......."in which the immune systen begins to recover, but then responds to a previously acquired opportunistic infection with an overwhelming response that paradoxically makes the symptoms of infection worse. A condition sometimes seen in AIDS or "Immune Suppression" (this last quoted from wiki)

The most common infections typically associated with IRIS being Herpes Zoster, CMV, MAC, Pneumocystis Pneumonia, Mycobacterium Tuberculosis.

(increased activity of cytokines can contribute to some forms of IRIS as well.)

if you dig around you can read about quite a few instances of iris (anecdotal and studies).

although unpleasant, scary and having the potential to be dangerous if left unchecked, in a person with a fragile i.s. - ithe implications are exciting! and it can develop more than a year after starting haart, for example! maybe tcell counts (at the very least) are in order...do you have any previous tcell counts to compare?

i also read about iris taking place in someone with myeloma using immune-suppressants....and then developing vzv reactivation and pulmonary aspergilliosis! (which was treated) I think i may have posted some of these ideas previously to sue (ladybugmandy), got confused, sorry!

im quite interested in IRIS myself! good luck...jackie
 

gu3vara

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I sincerely hope we cannot develop Progressive multifocal leukoencephalopathy (PML) with effective treatments like AIDS patients do, this is a killer and sounds pretty scary!

I don't think we are susceptible to a dangerous reconstitution syndrome like them (hope so) because we are probably way less immunocompromised than them, just really unpleasant ones.
 

jackie

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gu3vara...while i was looking into Polymaviruses, for example (the two which cause disease in Humans) I saw that (from Brain biopsy data) patients with PML - IRIS demonstrated MASSIVE inflammation - with infiltration by Machrophages and cd8 Lyphocytes (as opposed to "classical" PML - where damage is believed to be caused by the JV Virus itself)

In some cases the Immune response had completely wiped out any evidence of active JCV infection, but the imune cells continued reacting! (perhaps to latent antigens or inactive infectious particles?...i dont fully understand.)

I wonder how "immunocompromised" we really are...in my case I have vzv (shingles) on BOTH sides of my body at the same time...(which is confusing and usually seen in immunocompromised individuals only)... and yet i NOW have a high cd4. sigh:confused:....yes, i agree, really unpleasant ones! jackie
 

natasa778

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hi natasa!...my LIMITED understanding of IRIS...is that it represents a restored ability to mount an "inflammatory response" - and this response does not necessarily signal a reactivation or worsening of symptoms of the "primary disease" (mistaken for a true disease progression) but rather a protective process initiated by the body (indicating a better chance to defeat infection leading to eventual improvement of the disease). intriquing (imo it is much more common...but is just now being investigated and tracked)
yes but those are not exclusive imo. take a hypothetical CMV chronically infecting CNS, with localised relatively low-level issues (still causing obvious neurological symptoms, that are 'part of CFS') , with a limited inflammatory response. Possibly even a low level leukocyte infiltration to those parts of the CNS, limited simply because CD4/8 levels are low overall, cannot be produced due to immune surpression.

Then enter retrovirals - first of all CMV is now reactivated, causing renewed replication and spreads to a wider area... And secondly, because of the new boost to the immune system (by drugs holding back hiv/xmrv or whatever else had been blocking CD4/8 production), the number of leukocytes suddenly goes up and after the virus, with increased CNS infiltration/inflammation.
 

silicon

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Hi Cfs_since_1993,

I’m sorry to hear of your difficult experience with the antiretrovirals. Please be gentle with yourself, and please don’t be a hero regarding these meds. And perhaps some other approach (although I imagine you’ve already tried many) might bear some fruit.
 

gu3vara

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I agree with silicon, if you choose to go down this road, be sure to take safe doses.

I personnaly wouldn't touch them with a 10 feet pole until more is known about XMRV. My gut feeling is that even if XMRV is the cause of CFS, classic antiretrovirals alone won't do much in the short term. No idea after 2 years though...! Perhaps ART with ampligen or antiviral will provide faster results.
 

Daffodil

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hi all. thanks for the kind words. i also think ampligen + ARV's will be the way to go but i dont have that option at the moment.

i am also wondering about adding acyclovir because when i used to take it, my absolute RNase L activity almost normalized...but the LMW RNase L didnt change much.

my doctor said i can double the AZT to 300 BID so i am going to do that.

i will also ask him on Thurs if i can add Tenofovir but not sure he will let me

right now, i am very very sick. i do not feel like the drugs have helped at all.

sue
xox
 

Daffodil

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increased AZT to 300 mg BID on monday and just had my 3rd "goodish" day (less brain fog, a little more energy). i am also on RAL. doctor says he wants to wait on adding Tenofovir.

i am thinking CNS penetration will be important and RAL and Tenofovir don't get up there too well....doc says he will not increase AZT any further; this is the current HIV dose.

sue
xoxo
 

cfs since 1998

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increased AZT to 300 mg BID on monday and just had my 3rd "goodish" day (less brain fog, a little more energy). i am also on RAL. doctor says he wants to wait on adding Tenofovir.

i am thinking CNS penetration will be important and RAL and Tenofovir don't get up there too well....doc says he will not increase AZT any further; this is the current HIV dose.
Hi, glad you are feeling a bit better. Do you mean you've had 3 good days consecutively in a row now, since Monday? Or just 3rd day since starting?

Your hypothesis regarding CNS penetration sounds quite plausible. I'm going to search more on that.
 

Daffodil

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hi cfs...sorry by the way..i will change names soon.

i mean i increased azt on monday and tues, wed, and thurs were a little better.

i think tenofovir and RAL only get into the brain like 3 or 4 % of plasma levels?...cant remember exactly.

we need new drugs that will get up there.
 

redo

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The negative reaction you've got (tachycardia, restlessness and insomnia) really reminds me of what happened when I got broad spectered IVIG (Intra Venous Immune Globulins).

The IVIG I got was antibodies collected from healthy people. If XMRV is present in 3.7% of healthy people, then that suggests I got a pretty good dose of XMRV antibodies in me.

Well, anyway, what happened when I got the IVIG was that I got a strong restlessness in my body, I got severe insomnia (impossible to sleep no matter how long I'd been awake) and an increased heart rate.

I don't think the antibodies was enough to do anything but poke at the virus.
The negative effects I got, vanished after some weeks. And then I was back to how I was before I began.
 

Daffodil

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hi all. still feel like something positive is happening in my head, where i think most of the virus is for me, deep in tissues. i am still extremely weak and cannot do much...have air hunger..want to be horizontal all the time. feel like this might take years. think i need meds like azt, which penetrates BBB. feel like AZT is making a difference.

will know more when blood test results come back in a few weeks.

very few drugs have good entry into CNS so development of future XMRV drugs worries me..i dont want to take AZT for more than a couple of years.

sue
xoxo
 

jackie

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sue...can you share what labs you had done recently (what you are wating for results on?)...also, cant remember if you already said....have you tested positive or are your numbers above normal for hhv-6?) thanks, j